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Calprotectin 274, colonoscopy pending. Advice, please.

Posted , 2 users are following.

Malomay
Malomay

Hi guys,

I'm hoping someone can give me some insight. Almost 2 years ago, when I was about 6 months pregnant with my daughter I started having some rectal bleeding, and my OB was sure it was hemorrhoids. I saw my Dr a yr ago, when my daughter was 6 months old as the bleeding was persistent and she also told me internal hemorrhoids. I finally saw a GI Dr last month as it hasn't gone away, even with steroid suppositories. He too thought internal hemorrhoids but decided to check my fecal calprotectin levels as I have a family history of UC. It came back with a 274 and now he wants a colonoscopy. Looking back, I've always had problems using the restroom, but more like not being able to go even though my stomach hurt and I felt like I needed to. I self diagnosed lactose intolerance around age 20, though the symptoms seem to come and go with that so I'm not positive I actually have it. During my pregnancy, I started having some pretty bad Marriage issues and became depressed. Then once I had the baby it became normal for me to go poo at least a couple times a day.... I didn't think much of it because hey, it's better than what I had before. I figured it was pregnancy that changed my bowel habits. I do have some stomach pain, and urgency issues but nothing like what I've heard with UC. So I'm just unsure of what to think. I bleed Everytime I have a bowel movement, along with mucus. Buy I don't have diarrhea all the time, just bouts. Any advice?? My colonoscopy is scheduled for Jan 5th but the wait is killing me. Thanks in advance.

Mallory

0 likes, 7 replies

7 Replies

  • kate3107
    kate3107 Malomay

    Posted

    Mallory… i honestly can’t believe I’ve found this post, i could’ve written it myself. i’m currently on week 8 of rectal bleeding, but no urgency to go to the bathroom. I have internal piles, but nothing seems to help them. (I’m also 28 weeks pregnant) seeing a specialist on tuesday. Ive had an abnormal stool sample, but blood work was all fine. 

    Can you tell me how you got on? xx

    • Malomay
      Malomay kate3107

      Posted

      Hey! I have a family history of ulcerative colitis. That paired with the long term rectal bleeding and the high fecal calprotectin level, Dr decided to do a colonoscopy. He did state he thought they were internal hemorrhoids, but apparently you cannot confirm internal hemorrhoids. But all of that to say that my colonoscopy came back that I have ulcerative proctitis (which is a mild form of ulcerative colitis, contained to the rectum right now). He said he expects it to turn into full blown ulcerative colitis, that it's just a matter of time. He's got me on a medicated enema for 3 weeks to help the current flare up, and then I'm on a oral medication 2x a day to hopefully prolong my time in between flare ups, and to push back how quickly it affects my whole colon. If you've had an abnormal stool test they may want to do a colonoscopy, but can't do it while still pregnant.... At least o hope they will take it seriously. It took me 2 years of rectal bleeding before anyone took me seriously.

  • kate3107
    kate3107 Malomay

    Posted

    Did you have constant blood in your stools the whole time during that two year period? 

    I honestly feel so down and anxious at the moment. I hate the thought of having blood in a my stool everyday and not knowing why. 

    Have your symptoms got worse at all? Or still pretty mild? 

    I am having a consultation on Tuesday but like you said they’ve already pretty much said they can’t investigate further right now because I’m pregnant. 

    Just hoping a specialist can at least look at my results and give me a better idea. 

    Did you have any bloods done at all? 

    I’m sorry you got a diagnoses you probably weren’t wanting to here. I hope your mild version stays that way for as long as possible.

    Thanks for replying to me. I really appreciate it! X

     

    • Malomay
      Malomay kate3107

      Posted

      Kate,

      I did have blood in my stool everyday, and with every bowl movement... Even blood without a bowel movement. There was also mucus. Before I had my baby, or got pregnant, my regular schedule of bowel movements was to go to the bathroom like every other day. After I had the baby I was going a lot more frequently (3 or so times per day). I didn't think much of how many times I was going, just that there was blood every time. And the blood coated my stool most of the time, not just blood on the tissue. There were also some clots, but they weren't really big. I didn't suspect ulcerative colitis because my stool was not diarrhea, it was just frequent. But honestly, I just believed my OB that it was normal so I didn't pay much attention to the other details, and figured it was just changing because I had the baby. But then when 6 months postpartum came and I was still bleeding, and then another year.... Yeah something definitely isn't right. As for my labs they came back normal - meaning no anemia. But I didn't have any special labs done, just regular check-up type stuff.

      Try not to stress too much. I'm thankful you are seeing a specialist. They can at least do a stool sample. My Dr did the fecal calprotectin test and that is a good Indicator that something might be wrong or not. You can do that while pregnant, I suggest you ask for that if they don't offer it. Please keep me posted on your progress!! Good luck with the baby, too. So excited for you. 💓 Hope I have helped in some way. I'll be praying for you.

      Mallory

  • kate3107
    kate3107 Malomay

    Posted

    Mallory I can tell you that you’ve beyond helped me just by replying. It’s very frustrating not having a diagnoses as such. And so lovely to be able to ask someone questions smile 

    My docs have done calprotectin tests. I had one 2 weeks ago and my levels were at 600!! Which is insanely high. I live in the uk (not sure where you’re  based) but they class anything over 50 abnormal

    But my latest results came in today and they have gone down to 79.. which is still high. But I’m hoping that’s a good sign since I’ve taken no meds to make this happen. 

    How are you now you’ve been diagnosed. Have you been keeping well and are you still passing blood! 

    X

    • Malomay
      Malomay kate3107

      Posted

      I'm in the US (Oregon), and they classify 50 or below as normal, 50-120 as borderline, and over 120 as high. But also your numbers go higher when you're having a flare up, so your lower levels now may just mean you're coming down from a flare up. I'm glad your regular Dr when gave you a calprotectin test! I'm new to all off this, but none of the regular drs I saw even mentioned it. Calprotectin means there is inflammation in your colon. I'm not sure how they do things in the UK but when they did my colonoscopy they took biopsies so that even if my colon looked normal (not having a flare up) they could tell if I've had a flare up in the past. Thankfully the rest of my colon looks good. Dr has me on two forms of the same medicine. One is an enema sad it's so lame to have to do it but I think it may be helping my current flare up - though I've only been on that for less than a week (need to do 3 weeks to total). Then he has me on the pill form of the same medicine 2x per day. The pill is supposed to hopefully prevent another flare-up/prolong the progression of UC to my entire colon. He didn't want to do the same exact medicine by enema and by mouth, but unfortunately the other medicine he wanted me to take wasn't safe during breastfeeding, so he switched. But from I have read what I'm is just basically a strong anti-inflammatory. They'll have to do labs every 6 months to make sure my kidneys and liver are processing it ok. I'm hoping this will help. I'd like to not have to go on steroids or anything more serious. Guess only time will tell!

  • kate3107
    kate3107 Malomay

    Posted

    It sounds like a similarly process over here as to what you guys do over there. I’m hoping since my numbers came down so rapidly with no help it might mean theirs a slim chance that I don’t have ibd! 😬 but I won’t know for sure until have a camera look around. Plus I’m still bleeding every time I poop. Although without pain! 

    Such a bummer (excuse the pun!!) 

    How are you feeling on the meds? It must be hard to adjust. 

    Hopefully the meds will keep yours mild for as long as poss. I have read lots of positive stories about being in remission and staying that way for long periods! 🙌🏻🙌🏻 Trying to stay positive for now x

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